October is Pregnancy and Fetal Loss Awareness month. The Foundation wanted to share this article about Stop Bloq, which is an intervention and life-saving initiative for fetal health in expecting women with Sjögren’s and/or lupus who test positive for anti-Ro/SSA antibodies.
Stop Bloq Initiative
Lately, the Foundation has been fielding a lot of questions about pregnancy and Sjögren’s, and we wanted to make sure that new and future expecting mothers know about this life-saving initiative. The Stop Bloq Initiative lead by investigators Jill Buyon, MD and Bettina Cuneo, MD is a life-saving research and intervention program for women who are at high-risk of carrying a child with fetal heartblock.
Stop Bloq stands for Surveillance and Treatment tO Prevent Fetal atrioventricular Block (AVB) Likely to Occur Quickly. Fetal AVB, also called fetal heart block, is a condition where the fetal heart beats too slowly. In patients with autoimmune disease, specifically patients who are positive anti-SSA/Ro, autoantibodies may attack the heart and cause tissue damage or scarring that affects the way the heart beats. At 11 weeks, Sjögren’s antibodies (anti-SSA/Ro and anti-SSB/La) can be detected circulating in the maternal placental transport system.
Fetal heart block occurs between the 17th and 25th weeks of pregnancy. The risk for fetal heart block is relatively low at 2% for mothers with no previously affected children. Mothers that have previous children with fetal heart block have a 7.5-18% chance of having another child with fetal heart block. Unfortunately, there are not a lot of prevalence studies on fetal heart block to have a more accurate range.
Fetal heart block occurs in three degrees of severity: 1°- early damage, 2°- evolving damage, and 3°-complete damage. First and second-degree heart block can usually be reversed, and children usually go on to live with a good quality of life. However, there is a 17.5% mortality rate for those with 3rd degree fetal heart block and most children will require a pacemaker that is needed for life. Currently, fetal heart block cannot be cured, but it can be prevented. A study showed that hydroxychloroquine can reduce the recurrence rate of fetal heart block by half, and currently, no studies have been published on first pregnancy.1
The Stop Bloq Initiative is actively enrolling women that are less than 20 weeks pregnant and test positive for anti-SSA (Ro60 or Ro52) antibodies. Other inclusion and exclusion criteria apply. The study lasts about 2 years and will include approximately 10 study visits. You must be within six hours of a study site. The study distinguishes whether mothers who have high levels of anti-Ro60 or Ro52 antibodies. If the mother has high levels of anti-Ro antibodies, then they will subscribe to weekly or biweekly echocardiograms to monitor the baby’s heartbeat 3x/day. If the baby develops a fetal heart block, then the mother will be treated with dexamethasone and IVIG.
The enrollment for Stop Bloq is currently at 573 participants and split into two groups: Group 1: 261 participants with low Ro52 and Ro60 antibodies, and Group 2: 361 participants with high Ro52 and Ro60 antibodies. Of 573 mothers, 240 sent audiotexts of their fetal monitoring to pediatric cardiologist to analyze what they thought were abnormal echocardiograms. Of those 240 mothers, 10 cases of fetal heart block were found with most participants having higher levels of Ro52 and Ro60 antibodies and exceeding the threshold. There were seven 2° fetal heart blocks which were identified in less than 12 hours from receipt of the audiotext and three 3° fetal heart blocks that were recognized later. Furthermore, fetal heart block was not found in all mothers with higher levels of antibodies nor was fetal heart block found in any mothers with lower levels of antibodies.
Overall, the Stop Bloq presents an opportunity to reverse damage caused by Ro52 and Ro60 antibodies to the fetus preventing lifelong disability and/or mortality.
To learn more about the Stop Bloq initiative, please visit Stopbloq.org. To enroll at any site, please contact Mala Masson. Senior project manager phone: 212-263-032, email: Mala [dot] Masson [at] nyulangone [dot] org (Mala[dot]Masson[at]nyulangone[dot]org)
Citation:
Izmirly P, Kim M, Friedman DM, et al. Hydroxychloroquine to Prevent Recurrent Congenital Heart Block in Fetuses of Anti-SSA/Ro-Positive Mothers. J Am Coll Cardiol. 2020;76(3):292-302. doi:10.1016/j.jacc.2020.05.045
This article was first published in the May/June 2024 issue of Conquering Sjögren’s.
October is Pregnancy and Fetal Loss Awareness month. The Foundation wanted to share this article about Stop Bloq, which is an intervention and life-saving initiative for fetal health in expecting women with Sjögren’s and/or lupus who test positive for anti-Ro/SSA antibodies.
Stop Bloq Initiative
Lately, the Foundation has been fielding a lot of questions about pregnancy and Sjögren’s, and we wanted to make sure that new and future expecting mothers know about this life-saving initiative. The Stop Bloq Initiative lead by investigators Jill Buyon, MD and Bettina Cuneo, MD is a life-saving research and intervention program for women who are at high-risk of carrying a child with fetal heartblock.
Stop Bloq stands for Surveillance and Treatment tO Prevent Fetal atrioventricular Block (AVB) Likely to Occur Quickly. Fetal AVB, also called fetal heart block, is a condition where the fetal heart beats too slowly. In patients with autoimmune disease, specifically patients who are positive anti-SSA/Ro, autoantibodies may attack the heart and cause tissue damage or scarring that affects the way the heart beats. At 11 weeks, Sjögren’s antibodies (anti-SSA/Ro and anti-SSB/La) can be detected circulating in the maternal placental transport system.
Fetal heart block occurs between the 17th and 25th weeks of pregnancy. The risk for fetal heart block is relatively low at 2% for mothers with no previously affected children. Mothers that have previous children with fetal heart block have a 7.5-18% chance of having another child with fetal heart block. Unfortunately, there are not a lot of prevalence studies on fetal heart block to have a more accurate range.
Fetal heart block occurs in three degrees of severity: 1°- early damage, 2°- evolving damage, and 3°-complete damage. First and second-degree heart block can usually be reversed, and children usually go on to live with a good quality of life. However, there is a 17.5% mortality rate for those with 3rd degree fetal heart block and most children will require a pacemaker that is needed for life. Currently, fetal heart block cannot be cured, but it can be prevented. A study showed that hydroxychloroquine can reduce the recurrence rate of fetal heart block by half, and currently, no studies have been published on first pregnancy.1
The Stop Bloq Initiative is actively enrolling women that are less than 20 weeks pregnant and test positive for anti-SSA (Ro60 or Ro52) antibodies. Other inclusion and exclusion criteria apply. The study lasts about 2 years and will include approximately 10 study visits. You must be within six hours of a study site. The study distinguishes whether mothers who have high levels of anti-Ro60 or Ro52 antibodies. If the mother has high levels of anti-Ro antibodies, then they will subscribe to weekly or biweekly echocardiograms to monitor the baby’s heartbeat 3x/day. If the baby develops a fetal heart block, then the mother will be treated with dexamethasone and IVIG.
The enrollment for Stop Bloq is currently at 573 participants and split into two groups: Group 1: 261 participants with low Ro52 and Ro60 antibodies, and Group 2: 361 participants with high Ro52 and Ro60 antibodies. Of 573 mothers, 240 sent audiotexts of their fetal monitoring to pediatric cardiologist to analyze what they thought were abnormal echocardiograms. Of those 240 mothers, 10 cases of fetal heart block were found with most participants having higher levels of Ro52 and Ro60 antibodies and exceeding the threshold. There were seven 2° fetal heart blocks which were identified in less than 12 hours from receipt of the audiotext and three 3° fetal heart blocks that were recognized later. Furthermore, fetal heart block was not found in all mothers with higher levels of antibodies nor was fetal heart block found in any mothers with lower levels of antibodies.
Overall, the Stop Bloq presents an opportunity to reverse damage caused by Ro52 and Ro60 antibodies to the fetus preventing lifelong disability and/or mortality.
To learn more about the Stop Bloq initiative, please visit Stopbloq.org. To enroll at any site, please contact Mala Masson. Senior project manager phone: 212-263-032, email: Mala [dot] Masson [at] nyulangone [dot] org (Mala[dot]Masson[at]nyulangone[dot]org)
Citation:
Izmirly P, Kim M, Friedman DM, et al. Hydroxychloroquine to Prevent Recurrent Congenital Heart Block in Fetuses of Anti-SSA/Ro-Positive Mothers. J Am Coll Cardiol. 2020;76(3):292-302. doi:10.1016/j.jacc.2020.05.045
This article was first published in the May/June 2024 issue of Conquering Sjögren’s.
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